Tales of a Terminal Mummy

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Another List…

We have all read them. Those lists entitled “10 things to never say to a Cancer patient” (or something along those lines). I’ve shared many on Facebook myself. They are a great and often a terrible reminder that we are so ill equipped to support a loved one through their cancer journey. I myself have said many of these to others, as most are really just natural, automatic, human responses. You search for something to say to protect your own hurt. Something that makes you feel a little better and makes facing the hard a little easier.

These are my own additions to those lists and yes Dear Reader, some of them have probably come from you. Remember when I promised you I’d be honest? Please don’t read this blog and search or mull over whether or not at some stage you have ‘said this’ or ‘done that’. Or that I was upset or angry at you for a second. I have been so lucky this past year to be surrounded by love and so many that have encouraged and supported me with kind words. I know how hard you try to find some way to make it right. The aim of this blog post is not to shame, but rather, may help you think twice when offering love to someone with cancer. I would never have thought of any of this pre-cancer, so really we are all on this journey together.

WHEN DOES YOUR TREATMENT FINISH?

I am really struggling with this question at the moment. Funnily enough, I don’t just get it from friends and family, but also from health professionals like the radiographers who do my scans, pharmacists organising meds or even ED doctors. “So when will you be finished treatment?” is almost always asked and definitely always leaves me completely and utterly at a loss to answer appropriately. Because how do you appropriately say “when I die” in a way that doesn’t make the person asking feel like utter crap? I usually stutter around a bit and then say “I have a terminal diagnosis so I’ll never really stop”. I feel for these guys every time. I watch them struggle to find the right words, and sometimes can’t help the tears that pop up because I wish they didn’t have to. I admit it, once I lied and said “I only have 5 treatments left” with a big smile. That was much easier! I get it though. The success rate for cancer treatment these days is great and when you combine that with someone that is as young and (semi) healthy looking as me, you don’t readily assume that I’m one of the unlucky few. Try the question, “how is your treatment going?” instead.

YOU CAN BEAT THIS. MIRACLES HAPPEN…….

No. No I won’t and no they do not. No one has ever been cured from stage IV metastatic breast cancer. There is no cure…yet. Dear Reader, every time you say this to me, it’s a pretty awful reminder that I’m going to die. Then I then have to come up with some form of response that explains all of the above, even though you really already know this. Or, should I agree and then start to open the doors of hope that I might beat cancer? I actually battle daily with these thoughts of hope, often finding myself thinking that maybe I will be the miracle you read about in the paper. This is a very, very dangerous and unhealthy pastime and I am thankful that for the most part, I’m realistic about my journey and end. Don’t get me wrong, I do live everyday with hope, but its hope for more time, not a cure. This I know to be possible and achievable. The other kind of hope can do a lot of damage because cancer has a sneaky way of slapping you in the face with reality whether you like it or not. It’s already a long way to fall when your faced with hospital admissions, pain, hair loss and everything else cancer does to you and your life. It strips you bare in sometimes the smallest of ways, yet these sometimes hurt the most. Kind of like a paper cut. I can’t imagine how much harder battling through these would be, if I was pretending like it wasn’t going to happen or that it would end soon. I think part of the reason why I have faced cancer so well is that I knew most of the symptoms were coming and had a plan. You can, Dear Reader, easily live in denial, and why shouldn’t you? In no way do I want you to shoulder the weight cancer has placed upon my shoulders, but it does make me feel like I have failed you. Because I wasn’t strong enough to get the good, curable kind of cancer and eventually, I am going to die.

YOU’LL BE DIFFERENT….

Often, when I voice my fears about dying and the awful decline that is inevitable with terminal cancer, people try to suggest that I’ll be different. That it won’t happen to me. That I won’t be the one lying in the hospice, jacked up on morphine for weeks before I die, again having my butt wiped for me. I just want to scream whenever I hear it and tell you, Dear Reader, to stop lying to me. Deep down, we all know the truth and I need to face it with my big girl panties on, firmly pulled up to my waist. Again, creating a false sense of hope around dying with dignity is a dangerous sport. It’s not something I am likely to experience, and it’s going to be hard enough without it slapping me in the face because I wasn’t ready or accepting of it. With the help of my therapist, I have realised I’ll never be okay with how I am going to die and that I have no control over it. It doesn’t make it any less frightening though, and I often need to just talk about it and run through all the ‘what if’s’, otherwise they eat my brain alive. When getting into these conversations with someone who has cancer, be very careful of trying to find silver linings for minor things, because they again tend to be laughable when compared to the actual issue, and can quickly bring up the anger of the sheer injustice of it all.

I KNOW HOW TO CURE YOU! DRINK CARROT JUICE….

True story. Someone actually did send me this information with a whole write up on how drinking carrot juice would cure my cancer. It was sent with such beautiful intentions, but I’m going to admit, I didn’t read it. Lots of people have sent me great info on natural cancer cures, and not just me, to my whole family. I replied and gave them my thanks, letting them know I would get straight onto it. I lied. I’m a big fat liar. What I really did was delete them straight away and eat a cookie. Don’t get me wrong, I love a good carrot. But if I’ve only got 3 months left to live, I’m going to eat my way through the confectionary isle at Coles. Then the pastry isle, then the icecream freezers…you get my drift. To be honest with you, the only person in which I will ever place my faith is my oncologist. If she told me to drink distilled bat blood because it would help with my treatment, I would. Thankfully, she doesn’t, and actually encourages me to go stuff my face with whatever the heck I want. Even now with my new diabetes status. Her comment to the specialist when they first realised I had diabetes was, “this is a woman that likes to share a meal with her daughter and we must not change that. We will just give her more insulin”. I’m lucky that I actually have a huge love affair with most healthy foods and have a pretty great diet. I just like to balance this out with the unhealthy stuff at midnight! So if you, Dear Reader, ever come across information such as ‘drinking carrot juice will cure cancer’, I encourage you to pass it on to your local oncologist first and let them share it with their patients (because I know I don’t stand alone in feeling this way).

IF YOU DON’T PASS THIS ON TO 5 FRIENDS IN THE NEXT 5 MINUTES YOU WILL DIE……

Ahh, chain mail. I’m not sure I know anyone who actually likes it or believes in it, yet somehow my inbox seems to be full of it. Don’t get me wrong, Dear Reader, I know why you send it. You send those sweet poems about how I’m a good mum or woman, and you want to remind me of that and make me happy. But all I see is that last line that says, “If you don’t pass this to 5 women in 5 minutes you are going to die”. When you really think about it, it’s pretty darn insensitive to belittle death in such a way to someone who is actually facing it for real. Or even bad/good luck – I think I’ve had enough bad luck to last me a lifetime thank you very much! Please, please think twice before sending chain mail to one with cancer. What seems like a fun ‘game’ can really sting.

I FOUND A LUMP BUT IM TOO SCARED TO GET IT CHECKED OUT……

This has actually happened a couple of times to me lately, where friends have felt like they have no one else to talk to, and that I’ll give the best guidance because I can ‘relate’. Problem is, I can’t and I’m not. I can’t relate because I never had a lump. I never had the opportunity to make an appointment to get checked. That could have saved my life. I’m not the best person to talk to about this because my answer is probably not going to be the nice, gentle, supportive one you want to hear. Rather, it will more likely be a big kick up the butt with a not so gentle reminder that this one of those moments where you need to put on your big girl panties… That there are people dying of cancer every single day… That I would give anything to have had the opportunity to find my cancer earlier. For me, it’s a no brainer. You have a lump, you get it checked out, yesterday. A friend recently said to me that she was too scared to have her lump checked because she wasn’t as strong as me. Don’t be fooled. I’m in no way strong because I want to be or it comes easily. It’s just that given the choice of being strong, or laying down on the floor in the foetal position singing Whitney Houston songs all day, I choose the former, for Nyah. If it was just me and hubby, I’m pretty sure that Whitney would reign. My point is, if you’re struggling with this, try and find encouragement and support from someone that’s not currently dying from the very thing you could very well prevent. Early detection of all cancers, especially breast cancer, is key. It can mean the difference between a terminal or curable diagnosis. And let me tell you, Dear Reader, that is a huge difference.

LET’S CATCH UP…..

I struggled a lot with this in the early days of my diagnosis. I was facing a bit of celebrity status. Once again, I think a really normal response to tragedy is to reach out. To try and offer support and love in an attempt to do whatever you can to help. It’s a beautiful thing to see so many people moved into action, and to this day I still wonder what I did to deserve such love from every turn. Because of this though, people I haven’t seen for many, many, many years (we are talking at least 10!) years wanted to ‘catch up’. Whilst it was amazing that so many people were thinking of me, it was equally as tough. I knew that the only reason they wanted to see me was because I had cancer and was going to die soon, not because they sought my friendship and valued me as a person… as ‘Lyndsey’ who has many different qualities and things to offer. Had that of been the case, we would have been in each others lives long before the cancer arrived. When I first told the world via Facebook that I had terminal cancer, I was stuck in the hospital with no service. When I finally found some, I had over 40 friend requests. I know, Dear Reader, you wanted to know what was going on, and perhaps leave me a message of support. But it made me feel as if the only worth I had was cancer. Let’s not forget that cancer stole everything, so I was already only defined by that anyway. To then find out that because I had cancer, suddenly a thousand people liked me, were commenting on how wonderful a person I was (though they hadn’t seen me for years and didn’t know me), were talking about our wonderful friendship that actually fizzled out after school, and were even saying that they loved me made me feel empty, worthless and angry to be truthful. Because some of these people were nasty to me once upon a time, yet now I deserved their respect and kindness because I had cancer, not because of the other qualities that make up Lyndsey that were there all along. Had I never got cancer, we probably would not have seen each other for the rest of our lives. Don’t get me wrong, I was totally cool with that. If you haven’t seen someone in that long, then chances are you don’t have much in common that would allow you to maintain a close friendship anyway.

A few times I ended up having to ‘catch up’ with these friends and to be honest, it caused me a great deal of anxiety. Because once we got over the general ‘what have you been doing in the last 10 years’ chat, the only thing left to talk about is cancer. And no offence Dear Reader, if I haven’t seen you in 10 years then I don’t want to bare my soul to you, cry in front of you, or let you know how I’m really doing. If I passed you in the shops and you asked me how I was, my response would be ’I’m fine‘ and then I would deflect and move the conversation on. But I can’t do that when you’re sitting in my lounge room or are at my front door, crying about how shitty it is that I have cancer. Don’t get me wrong. I appreciate this. Truly I do. It’s beautiful and genuine, but I have a hard enough time holding myself together, let alone trying to comfort you too. I have been guilty of finding a ‘cancer buffer’. Forcing one of my friends to stay and pretend they just ‘dropped in’ too, so that I had some way to deflect the attention from me and cancer. I actually feel like a bit of a genius for coming up with this strategy!

Once again, I think in these situations it is often more about you than me. You needing to feel as if you have done a good deed and helped in some way. As time passes, those that were there to have a sticky beak have naturally drifted away, and friends that were there before cancer are still there in the exact same capacity now. I am so lucky to have a very close group of amazing friends that have been my constant, unwavering support. My advice to you is, if you want to reach out and offer support or reconnect with someone facing a cancer diagnosis, do so via text or email and let them direct the way your relationship evolves. That way they can be free to share and expose their feelings and thoughts in their own time in a way that is comfortable for them.

MY FRIENDS SISTERS, AUNTY DIED FROM BREAST CANCER….

I think when attempting to offer support, we often try to find common ground. Like if you can relate then you are better equipped to empathise and sympathise. You want your friend to know that you understand what they’re going through, and that they are safe to talk to you about it. So you pull out the story. The story I have heard a thousand times over. The one about your friend’s sister that had breast cancer and fought for 2 years and then died. And I know you feel that you are giving me hope, because she survived for 2 years, but all that echo’s through my head is that SHE DIED! I will be this person one day. The one people talk about to give others hope for more time. And I don’t want to be, because I died. But also because for however long I fought, it will never be enough. Hearing that someone survived for 2 years doesn’t make me feel better. Quite the opposite. Because I want 20…40…60 years. These stories are also often accompanied by a look or more details that describe how awful it was in the end. Cancer never ends nicely. I think I can speak freely for all terminal cancer patients when I say that we spend a lot of time thinking about death. Often, hearing these stories is comparable to getting slapped across the face with a week old trout. It stinks, and is an awful reminder when maybe you were having a moments break because your friend is here, and you are just Lyndsey again. It’s hard to pull yourself together after this. First to offer your condolences, and then move on with the conversation. Try not to compare stories or use this as a tool for support because again, it leaves a big sting that often continues long after you have gone home.

HOW WAS CHEMO (insert public place)…?

I’m so lucky that my friends ask me every day without fail “how are you?” But sometimes that question comes in the middle of a public place or even a birthday party, when we are surrounded by other mothers who don’t know me. Sometimes I like to pretend that there are people left in the world who don’t know me as ‘Lyndsey with cancer’. It’s easier these days, now that I don’t wear headscarves and have some hair back (I think I may have been kidding myself before that). Despite this, it’s hard when these questions come and I want to share with you, but don’t want to share it with the school mum standing beside you that was part of our conversation 2 minutes prior. She doesn’t really want to know that I spent the night vomiting or that I need to change meds. And I don’t want her to know either. Because I just want to feel normal and enjoy watching my girl have fun at the party! It’s often hard to find a way to tell you that I really don’t want to talk about it right now without hurting your feelings. Try to keep cancer chat for when it’s just you and me.

I KNOW IT DOESN’T COMPARE……

If I had a dollar for every time someone said this to me, I would be a millionaire. It’s driving me CRAZY! So many of my friends, in a beautiful effort to shield and protect me from more pain and hurt, have felt the need to hide their own troubles and pain. Or brush over an issue and say the dreaded words ’it doesn’t compare to what you’re going through’. Dear Reader, I know what your thinking when you say this. Something along the lines of ‘how the heck can I whinge about my ingrown toenail when Lyndsey is dying…’. And I get it. But all I hear and feel is you taking away my ability to still be a friend. Let’s not forget that cancer stole so very much! But one of the things it can’t and will never take, is my capacity to be a friend and provide love, support and advice. And here you are taking that away from me?! I can very easily compartmentalise and separate my cancer from your issues and problems. And I care very deeply about your ingrown toenail. When your telling me about it, trust me when I say that I am in no way thinking ’oh my god get over it my life is so much worse’. The only thoughts that run through my head in these moments are about you and how I can help. I have lots of empathy to give and have been known to come up with pretty good solutions to even the smallest of issues. In fact, when you treat me like a normal friend and we are sharing life’s normal ups and downs you’re doing me a big favour, because my cancer disappears for a second and I’m just Lyndsey again, thinking about your toes. But the minute those words come out of your mouth, its back and you have reminded me that yes, what I am going through is probably so much worse. Dear Reader, please never forget that just because I have cancer, the things that hurt or affect you suddenly don’t matter anymore, that you don’t matter anymore. Because then our friendship is all about me, and not really a friendship at all. Strong friendships are reciprocal. I’m not going to lie and say that sometimes some things you share don’t sting. It does happen, but mostly with the good stuff, like when my friend Krystal recently brought my Godson into the world. I was part of the whole journey, from the very first scan to the moment he entered this world, because seeing a baby being born was a very big thing on my bucket list. I feel the loss of not being able to have another baby very deeply and I know many were worried that I wouldn’t cope with being such a close part of this experience. But I could both grieve for my loss and be so incredibly happy for my amazing friend at the same time, and at no time did that grief ever outweigh the joy that the whole journey brought me. My life is full of what I like to call these ‘double bangas’, but it is my hope, Dear Reader, that you will let me choose what I can and cannot face.

EVERYTHING HAPPENS FOR A REASON…..

Nope, it doesn’t. And I increasingly HATE this statement, yet use it myself. Often. I catch myself saying it mid sentence all the time. Just the other day I was sitting in the car with a friend while our girls danced. We were chatting about the devastating loss of her baby all too recently. The words just came out of my mouth because I had nothing to say that could make it better or fix it. I would have given anything to take her pain away in that moment so this ‘ol faithful came out and brushed it off. It excuses or rationalises the shittiness, suggesting that some good might come out of it. The truth is though, most things don’t happen for any reason at all. She is not a better person and didn’t learn anything because her baby died. It will never make sense nor should it. It’s the same with cancer and all tragedy really. It destroys lives. Even if I did get cancer for a reason, what reason could there possibly be that’s good enough to make it okay? Sure, through cancer I have found good, so much good. More than I could ever have imagined. But I would trade it all in a heartbeat for good health and the knowledge that I will see my daughter grow. Once I realised what I had said to my friend, we talked about how dumb it was and then we agreed that sometimes, life is shit. It’s shit for no reason at all. I urge you to avoid this statement at all costs.

It is more than worth a read, and if you take nothing else away from both of our blogs, please remember this one thing. Terminal illness cannot be fixed. It can only be carried. There is nothing you can say that will ever lessen my grief or fix the fact that I am going to die and all that this encompasses. I hear you asking, Dear Reader, what can I do then? The answer is simple, yet possibly one of the hardest things one can do, walk with me on this journey. As Tim so eloquently says “note that I said with you, not for you. For implies that you’re going to do something. But to stand with your loved one, to suffer with them, to listen to them, to do everything but something is incredibly powerful. There is no greater act than acknowledgment. And acknowledgment requires no training, no special skills, no expertise. It only requires the willingness to be present with a wounded soul, and to stay present, as long as is necessary”.

Like I said at the very beginning of this long (sorry!) post, it is my sincerest hope that you don’t read this and analyze our relationship or interactions. I am overly guilty of doing every single one of these things and probably more. As I read back over this list I can’t help but be relieved again that I am the one that has the terminal illness and not you Dear Reader.It’s a minefield! I would detonate a thousand of those mines as I bumbled my way along trying to support you. Thank you, thank you for always having the best intentions and for trying so hard to fill my life with happiness and rainbows. It is because of this that I feel safe to share these thoughts that hopefully will help others on their journey. I don’t need the help, for I know you have got my back.

Hey Lyndsey
Just read your article on news.com.au .
My mums got terminal lung cancer and you say exactly the same things mum says. Your article has really helped me to understand more I know it will help so many others too. Perfectly written. I am glad I found your blog and look forward to reading more.
Thank you so much
David

OMG! Have you been a fly on the wall in my life for the last few years? You say it so well, it’s really whats being said in the Real World. I suffered these comments during my 12 year old daughter’s terminal cancer journey. And I know it’s only with the complete best intentions. I never met anyone who was being intentionally cruel. Having to listen and nod sympathetically while other parents tell me the horror (and yes I understand its horror for everyone) of their child’s treatment when the end result is CURE but when there is NO HOPE for us. Then discretely changing the subject when they ask about how we’re going. Another real pearler is the stories you hear about people who have been cured because they remained POSITIVE! FFS we haven’t been going round like Negative Nancys but theres no cure for us if we smile… There’s also “You’re so strong”. Yeah whatever. I’d be happy to be pathetic if it meant I had my girl with me. My all time fav has to be “everything happens for a reason”, and you my love have summed it up perfectly.
Unfortunately your family will one day have to deal with what someone said to me in the supermarket ” is this your first Christmas without your daughter? Oh its going to be hard”. Actually she was pretty lucky I didn’t punch her.
I’m sorry you have become so knowledgable on this subject, but please try to spend as much time as you can laughing. Life is pretty shit theres no denying, but laughter makes for happy memories.

Dear Lindsey, thank you for writing about this. I have stage IV triple negative breast cancer and you have said things that I often wish I had the courage to say to others. My pet peeve are those “friends” who immediately tell you that their mom, sister etc. have survived and so will I when they just don’t understand that there are different types of breast cancer. They also don’t seem to register that once you get to this stage it’s the end on the line. I also delete those well meaning emails and not tell anyone lol. Just like you I’m enjoying every minute, hour and day. I hope you have a good day today! Regards Dee